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诊断与患者身份的实践:诊断之旅如何塑造疾病体验。

Diagnosis and the practices of patienthood: How diagnostic journeys shape illness experiences.

机构信息

Institute on the Formation of Knowledge, University of Chicago, Chicago, Illinois, USA.

Institute on Health and Aging, University of California, San Francisco, San Francisco, California, USA.

出版信息

Sociol Health Illn. 2024 Mar;46(S1):225-241. doi: 10.1111/1467-9566.13614. Epub 2023 Jan 27.

Abstract

Sociologists have a rich history of studying the process of diagnosis and how people experience illness. Yet, the sociology of diagnosis and illness experience literatures have seldom been fully integrated. Instead, these literatures highlight one element of the illness journey, wherein scholars either primarily study diagnostic processes and categories or people's illness experiences. Drawing on empirical studies that examine diagnosis and experiences of illness in varied settings (diagnosis during breast cancer surveillance, diagnosis and experience of autoimmune illness and incarcerated women's experiences of diagnoses and illness), in this article we build on our concept of regimes of patienthood to explain how diagnostic journeys, and the relations and power dynamics that manifest during this time, shape the illness experience and practices of patienthood. We construct a classification of diagnostic processes grounded in our empirical research that span (1) sudden diagnoses, (2) long, changing diagnostic journeys and (3) diagnostic journeys marked by disbelief and denial of care. Our findings demonstrate how diagnostic journeys and illness experiences are intertwined, with different diagnostic pathways impacting how illness is experienced. Analysing these categories collectively demonstrates that diagnostic journeys, while heterogenous, shape the practices that patients develop to manage health conditions and navigate unequal health-care encounters.

摘要

社会学家在研究诊断过程和人们的疾病体验方面有着丰富的历史。然而,诊断和疾病体验的社会学文献很少被完全整合。相反,这些文献强调了疾病旅程的一个要素,学者们要么主要研究诊断过程和类别,要么研究人们的疾病体验。本文借鉴了在不同环境中研究诊断和疾病体验的实证研究(乳腺癌监测期间的诊断、自身免疫性疾病的诊断和体验以及被监禁妇女的诊断和疾病体验),我们基于我们的病患身份制度的概念,来解释诊断过程,以及在此期间表现出的关系和权力动态,如何塑造疾病体验和病患身份的实践。我们构建了一个基于我们的实证研究的诊断过程分类,涵盖(1)突然的诊断,(2)漫长、变化的诊断过程,以及(3)以怀疑和否认护理为特征的诊断过程。我们的研究结果表明,诊断过程和疾病体验是相互交织的,不同的诊断途径影响着疾病的体验方式。对这些类别的综合分析表明,尽管诊断过程各不相同,但它们塑造了患者为管理健康状况和应对不平等的医疗保健而发展的实践。

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